FPID Bulletin: The Bulletin of the Faculty for People with Intellectual Disabilities
Easy to read summary■Even though more psychologists are being trained, it can still be hard for I... more Easy to read summary■Even though more psychologists are being trained, it can still be hard for Intellectual Disability (ID) services to employ psychologists.■This article talks about the psychology training process and how this might not encourage people to work in ID.■We give some ideas of things that might help during training, so that Trainees can learn more about working in ID services.■We hope this might make them more likely to consider working in ID services.■This is important because if there are not enough psychologists in ID services, people with intellectual disabilities may struggle to find the psychological help they need.
Reports are published in Public Health Research (PHR) if (1) they have resulted from work for the... more Reports are published in Public Health Research (PHR) if (1) they have resulted from work for the PHR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. Reviews in Public Health Research are termed 'systematic' when the account of the search appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others.
Review Journal of Autism and Developmental Disorders
Autism is a neurodevelopmental condition that affects individuals across their lifetime, though t... more Autism is a neurodevelopmental condition that affects individuals across their lifetime, though the effects of ageing in older adulthood are poorly understood to date. This systematic review assessed six characteristics in older autistic adults (cognitive functioning, co-occurring difficulties, autism symptom severity, social integration, adaptive functioning, language processing). A total of 41 studies met inclusion criteria, 16 of which included autistic adults with intellectual disability, and three were longitudinal in nature. Findings show differing effects of ageing across the six domains. Factors contributing to discrepancies such as age and IQ differences, methodology, and healthy survivor effect are discussed. The need for more longitudinal studies to investigate changes across developmental stages alongside other limitations, future directions, and clinical implications are discussed.
Journal of Applied Research in Intellectual Disabilities
Background: People with intellectual disabilities are at risk of experiencing stigma and require ... more Background: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives. Method: Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre-existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2-4 months after the intervention assessed perceived impact. Results: Perceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self-efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre-existing self-advocacy skills was noted. Conclusions: This early-stage study indicates that further evaluation is merited to examine feasibility and outcomes of the STORM intervention.
Objectives: To evaluate the effectiveness of Person-Centred Planning (PCP) on outcomes for indivi... more Objectives: To evaluate the effectiveness of Person-Centred Planning (PCP) on outcomes for individuals with intellectual disabilities (ID) across the age range. Method: The electronic databases PsycInfo, Embase, CINHAL, PubMed, Web of Science, Scopus and Medline were searched for studies evaluating the impact of PCP on people with ID, published between 1990 and 2014; these were supplemented by manual searches of reference lists. Studies were considered irrespective of methodology, sample size and publication source, if outcomes reflected the impact of PCP on individuals with ID. Results: Seven quantitative, five qualitative and four mixed methods studies were included in the review. The overall quality of the evidence was low but suggestive that PCP may have a positive, yet moderate, impact on some outcomes for individuals with ID, particularly community-participation, participation in activities and daily choice-making. For other outcomes such as employment the findings were inconsistent. Conclusion: The evidence supporting the effectiveness of PCP is limited and does not demonstrate that PCP can achieve radical transformations in the lives of people with ID. Clearer descriptions of PCP and its components are needed. Small-scale successful demonstrations of effectiveness exist, but its clinical, cost-effectiveness and wider implementation must be investigated in large scale studies. Highlights There were 7 quantitative, 5 qualitative and 4 mixed methods studies. PCP was most effective for community participation. The methodological quality of the included studies was moderate to weak.
Supplemental material, AUT680914_Lay_Abstract for 'Suddenly the first fifty years of my life ... more Supplemental material, AUT680914_Lay_Abstract for 'Suddenly the first fifty years of my life made sense': Experiences of older people with autism by Aoife Hickey, Jason Crabtree and Joshua Stott in Autism
Background Behaviour that challenges in people with intellectual disability is associated with hi... more Background Behaviour that challenges in people with intellectual disability is associated with higher healthcare, social care and societal costs. Although behavioural therapies are widely used, there is limited evidence regarding the cost and quality-adjusted life-years (QALYs). Aims We aimed to assess the incremental cost per QALY gained of therapist training in positive behaviour support (PBS) and treatment as usual (TAU) compared with TAU using data from a cluster randomised controlled trial (Clinical Trials.gov registration: NCT01680276). Method We conducted a cost-utility analysis (cost per QALY gained) of 23 teams randomised to PBS or TAU, with a total of 246 participants followed up over 36 months. The primary analysis was from a healthcare cost perspective with a secondary analysis from a societal cost perspective. Results Over 36 months the intervention resulted in an additional 0.175 QALYs (discounted and adjusted 95% CI −0.068 to 0.418). The total cost of training in and ...
Background Positive Behaviour Support (PBS) for challenging behaviour is a complex intervention. ... more Background Positive Behaviour Support (PBS) for challenging behaviour is a complex intervention. Process evaluation is pivotal in fully understanding the mechanisms and contextual factors that impact on participant outcomes. Aims To conduct a process evaluation of a national clinical trial investigating the impact of PBSbased staff training on the level of challenging behaviour in adults with intellectual disability. Method The Medical Research Council guidance for process evaluation of complex interventions was followed. Semi-structured interviews with 62 stakeholders from the intervention arm (service users, family and paid carers, service managers, staff who delivered the intervention and PBS trainers), quantitative data from the study database and an external evaluation of the quality of the PBS plans were used. Results Twenty-one health staff volunteered to be trained in delivering PBS. Available log data from 17 therapists revealed that they worked with 63 participants a median of 11.50 hours (IQR 8-32). Only 33 out of 108 reports had included all elements of the intervention.
This study aimed to compare cognitive and memory abilities between older adults with and without ... more This study aimed to compare cognitive and memory abilities between older adults with and without autism over the age of 50. Twenty-eight individuals with autism and 29 typically developing (TD) older adults took part in the current study. Participants' cognitive and memory abilities were assessed by WAIS-IV and WMS-IV. Older autistic adults were found to have poorer performance in processing speed and visual working memory, but they performed at a similar level as TD controls in all other domains. Poorer processing speed and visual working memory are also often found to be associated with age-related decline in neurotypical adults. Longitudinal studies are warranted to explore how the combination of ageing and autism affects cognitive functioning in older adults.
Health technology assessment (Winchester, England), Mar 1, 2018
Preliminary studies have indicated that training staff in Positive Behaviour Support (PBS) may he... more Preliminary studies have indicated that training staff in Positive Behaviour Support (PBS) may help to reduce challenging behaviour among people with intellectual disability (ID). To evaluate whether or not such training is clinically effective in reducing challenging behaviour in routine care. The study also included longer-term follow-up (approximately 36 months). A multicentre, single-blind, two-arm, parallel-cluster randomised controlled trial. The unit of randomisation was the community ID service using an independent web-based randomisation system and random permuted blocks on a 1 : 1 allocation stratified by a staff-to-patient ratio for each cluster. Community ID services in England. Adults (aged > 18 years) across the range of ID with challenging behaviour [≥ 15 Aberrant Behaviour Checklist - Community total score (ABC-C)]. Manual-assisted face-to-face PBS training to therapists and treatment as usual (TAU) compared with TAU only in the control arm. Carer-reported changes...
The British journal of psychiatry : the journal of mental science, 2018
Staff training in positive behaviour support (PBS) is a widespread treatment approach for challen... more Staff training in positive behaviour support (PBS) is a widespread treatment approach for challenging behaviour in adults with intellectual disability. Aims To evaluate whether such training is clinically effective in reducing challenging behaviour during routine care (trial registration: NCT01680276). We carried out a multicentre, cluster randomised controlled trial involving 23 community intellectual disability services in England, randomly allocated to manual-assisted staff training in PBS (n = 11) or treatment as usual (TAU, n = 12). Data were collected from 246 adult participants. No treatment effects were found for the primary outcome (challenging behaviour over 12 months, adjusted mean difference = -2.14, 95% CI: -8.79, 4.51) or secondary outcomes. Staff training in PBS, as applied in this study, did not reduce challenging behaviour. Further research should tackle implementation issues and endeavour to identify other interventions that can reduce challenging behaviour. Declar...
Journal of autism and developmental disorders, Jan 7, 2017
We developed a brief, informant-report interview for assessing autism spectrum conditions (ASC) i... more We developed a brief, informant-report interview for assessing autism spectrum conditions (ASC) in adults, called the Developmental, Dimensional and Diagnostic Interview-Adult Version (3Di-Adult); and completed a preliminary evaluation. Informant reports were collected for participants with ASC (n = 39), a non-clinical comparison group (n = 29) and a clinical comparison group (n = 20) who had non-autistic mental health conditions. Mean administration time was 38 min (50 min for ASC). Internal consistency (αs ≥ 0.93) and inter-rater agreement (ICCs ≥ 0.99) were high. When discriminating ASC from non-ASC, the 3Di-Adult showed excellent sensitivity (95%) and specificity (92%). The 3Di-Adult shows promise as a psychometrically sound and time-efficient interview for collecting standardised informant reports for DSM-5 assessments of ASC in adults, in research and clinical practice.
Research on the experience of growing older with autism is very limited. In this study, 13 people... more Research on the experience of growing older with autism is very limited. In this study, 13 people with autism aged over 50 years participated in semi-structured interviews about their experiences of diagnosis, social support and getting older. Interviews were analysed using thematic analysis. Three overarching themes were generated: difference, life review and longing for connection. Prior to diagnosis, individuals had awareness of their difficulties, attributed these to intrinsic difference and engaged in a deliberate process of reducing the visibility of this difference. Diagnosis prompted a process of life review and externalisation, whereby past negative experiences were reattributed to autism as opposed to the self. Loneliness, isolation and yearning for interpersonal connection were ubiquitous and longstanding. Autism support and social groups were highly valued, offering opportunities for belonging, acceptance and social comparison. Results highlight the similarity to younger...
Background: Many people with intellectual disability present with challenging behaviour which oft... more Background: Many people with intellectual disability present with challenging behaviour which often has serious consequences such as the prescription of long term medication, in-patient admissions and disruption of normal daily activities. Small scale studies of Positive Behaviour Support (PBS) delivered by paid carers suggest that it reduces challenging behaviour and costs of care and improves quality of life. This study aims to investigate whether professionals training in the delivery of PBS as part of routine practice is clinically and cost effective compared to treatment as usual in community intellectual disability services. Method: The study is a multi-centre cluster randomised controlled trial involving community intellectual disability services in England and service users with mild to severe intellectual disability and challenging behaviour. The teams will be randomly allocated into one of two conditions, either training and support to deliver PBS or treatment as usual. We will carry out assessments of challenging behaviour, use of services, quality of life, mental health, and family and paid carer burden at six and 12 months. We will monitor treatment fidelity and we will interview a sample of paid and family carers, service users, staff and managers about what they think of the treatment and how best we can deliver it in routine care. The main outcome is reduction in challenging behaviour at one year after randomisation. We will also carry out a health economic evaluation to examine the costs and consequences of staff training in PBS. Discussion: The study findings will have significant implications for the delivery of PBS in community based services with the potential for reducing inpatient admissions and out-of-area placements for adults with intellectual disability and challenging behaviour. Trial registration: This trial is registered with Clinical Trials.gov (Ref NCT01680276).
FPID Bulletin: The Bulletin of the Faculty for People with Intellectual Disabilities
Easy to read summary■Even though more psychologists are being trained, it can still be hard for I... more Easy to read summary■Even though more psychologists are being trained, it can still be hard for Intellectual Disability (ID) services to employ psychologists.■This article talks about the psychology training process and how this might not encourage people to work in ID.■We give some ideas of things that might help during training, so that Trainees can learn more about working in ID services.■We hope this might make them more likely to consider working in ID services.■This is important because if there are not enough psychologists in ID services, people with intellectual disabilities may struggle to find the psychological help they need.
Reports are published in Public Health Research (PHR) if (1) they have resulted from work for the... more Reports are published in Public Health Research (PHR) if (1) they have resulted from work for the PHR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. Reviews in Public Health Research are termed 'systematic' when the account of the search appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others.
Review Journal of Autism and Developmental Disorders
Autism is a neurodevelopmental condition that affects individuals across their lifetime, though t... more Autism is a neurodevelopmental condition that affects individuals across their lifetime, though the effects of ageing in older adulthood are poorly understood to date. This systematic review assessed six characteristics in older autistic adults (cognitive functioning, co-occurring difficulties, autism symptom severity, social integration, adaptive functioning, language processing). A total of 41 studies met inclusion criteria, 16 of which included autistic adults with intellectual disability, and three were longitudinal in nature. Findings show differing effects of ageing across the six domains. Factors contributing to discrepancies such as age and IQ differences, methodology, and healthy survivor effect are discussed. The need for more longitudinal studies to investigate changes across developmental stages alongside other limitations, future directions, and clinical implications are discussed.
Journal of Applied Research in Intellectual Disabilities
Background: People with intellectual disabilities are at risk of experiencing stigma and require ... more Background: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives. Method: Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre-existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2-4 months after the intervention assessed perceived impact. Results: Perceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self-efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre-existing self-advocacy skills was noted. Conclusions: This early-stage study indicates that further evaluation is merited to examine feasibility and outcomes of the STORM intervention.
Objectives: To evaluate the effectiveness of Person-Centred Planning (PCP) on outcomes for indivi... more Objectives: To evaluate the effectiveness of Person-Centred Planning (PCP) on outcomes for individuals with intellectual disabilities (ID) across the age range. Method: The electronic databases PsycInfo, Embase, CINHAL, PubMed, Web of Science, Scopus and Medline were searched for studies evaluating the impact of PCP on people with ID, published between 1990 and 2014; these were supplemented by manual searches of reference lists. Studies were considered irrespective of methodology, sample size and publication source, if outcomes reflected the impact of PCP on individuals with ID. Results: Seven quantitative, five qualitative and four mixed methods studies were included in the review. The overall quality of the evidence was low but suggestive that PCP may have a positive, yet moderate, impact on some outcomes for individuals with ID, particularly community-participation, participation in activities and daily choice-making. For other outcomes such as employment the findings were inconsistent. Conclusion: The evidence supporting the effectiveness of PCP is limited and does not demonstrate that PCP can achieve radical transformations in the lives of people with ID. Clearer descriptions of PCP and its components are needed. Small-scale successful demonstrations of effectiveness exist, but its clinical, cost-effectiveness and wider implementation must be investigated in large scale studies. Highlights There were 7 quantitative, 5 qualitative and 4 mixed methods studies. PCP was most effective for community participation. The methodological quality of the included studies was moderate to weak.
Supplemental material, AUT680914_Lay_Abstract for 'Suddenly the first fifty years of my life ... more Supplemental material, AUT680914_Lay_Abstract for 'Suddenly the first fifty years of my life made sense': Experiences of older people with autism by Aoife Hickey, Jason Crabtree and Joshua Stott in Autism
Background Behaviour that challenges in people with intellectual disability is associated with hi... more Background Behaviour that challenges in people with intellectual disability is associated with higher healthcare, social care and societal costs. Although behavioural therapies are widely used, there is limited evidence regarding the cost and quality-adjusted life-years (QALYs). Aims We aimed to assess the incremental cost per QALY gained of therapist training in positive behaviour support (PBS) and treatment as usual (TAU) compared with TAU using data from a cluster randomised controlled trial (Clinical Trials.gov registration: NCT01680276). Method We conducted a cost-utility analysis (cost per QALY gained) of 23 teams randomised to PBS or TAU, with a total of 246 participants followed up over 36 months. The primary analysis was from a healthcare cost perspective with a secondary analysis from a societal cost perspective. Results Over 36 months the intervention resulted in an additional 0.175 QALYs (discounted and adjusted 95% CI −0.068 to 0.418). The total cost of training in and ...
Background Positive Behaviour Support (PBS) for challenging behaviour is a complex intervention. ... more Background Positive Behaviour Support (PBS) for challenging behaviour is a complex intervention. Process evaluation is pivotal in fully understanding the mechanisms and contextual factors that impact on participant outcomes. Aims To conduct a process evaluation of a national clinical trial investigating the impact of PBSbased staff training on the level of challenging behaviour in adults with intellectual disability. Method The Medical Research Council guidance for process evaluation of complex interventions was followed. Semi-structured interviews with 62 stakeholders from the intervention arm (service users, family and paid carers, service managers, staff who delivered the intervention and PBS trainers), quantitative data from the study database and an external evaluation of the quality of the PBS plans were used. Results Twenty-one health staff volunteered to be trained in delivering PBS. Available log data from 17 therapists revealed that they worked with 63 participants a median of 11.50 hours (IQR 8-32). Only 33 out of 108 reports had included all elements of the intervention.
This study aimed to compare cognitive and memory abilities between older adults with and without ... more This study aimed to compare cognitive and memory abilities between older adults with and without autism over the age of 50. Twenty-eight individuals with autism and 29 typically developing (TD) older adults took part in the current study. Participants' cognitive and memory abilities were assessed by WAIS-IV and WMS-IV. Older autistic adults were found to have poorer performance in processing speed and visual working memory, but they performed at a similar level as TD controls in all other domains. Poorer processing speed and visual working memory are also often found to be associated with age-related decline in neurotypical adults. Longitudinal studies are warranted to explore how the combination of ageing and autism affects cognitive functioning in older adults.
Health technology assessment (Winchester, England), Mar 1, 2018
Preliminary studies have indicated that training staff in Positive Behaviour Support (PBS) may he... more Preliminary studies have indicated that training staff in Positive Behaviour Support (PBS) may help to reduce challenging behaviour among people with intellectual disability (ID). To evaluate whether or not such training is clinically effective in reducing challenging behaviour in routine care. The study also included longer-term follow-up (approximately 36 months). A multicentre, single-blind, two-arm, parallel-cluster randomised controlled trial. The unit of randomisation was the community ID service using an independent web-based randomisation system and random permuted blocks on a 1 : 1 allocation stratified by a staff-to-patient ratio for each cluster. Community ID services in England. Adults (aged > 18 years) across the range of ID with challenging behaviour [≥ 15 Aberrant Behaviour Checklist - Community total score (ABC-C)]. Manual-assisted face-to-face PBS training to therapists and treatment as usual (TAU) compared with TAU only in the control arm. Carer-reported changes...
The British journal of psychiatry : the journal of mental science, 2018
Staff training in positive behaviour support (PBS) is a widespread treatment approach for challen... more Staff training in positive behaviour support (PBS) is a widespread treatment approach for challenging behaviour in adults with intellectual disability. Aims To evaluate whether such training is clinically effective in reducing challenging behaviour during routine care (trial registration: NCT01680276). We carried out a multicentre, cluster randomised controlled trial involving 23 community intellectual disability services in England, randomly allocated to manual-assisted staff training in PBS (n = 11) or treatment as usual (TAU, n = 12). Data were collected from 246 adult participants. No treatment effects were found for the primary outcome (challenging behaviour over 12 months, adjusted mean difference = -2.14, 95% CI: -8.79, 4.51) or secondary outcomes. Staff training in PBS, as applied in this study, did not reduce challenging behaviour. Further research should tackle implementation issues and endeavour to identify other interventions that can reduce challenging behaviour. Declar...
Journal of autism and developmental disorders, Jan 7, 2017
We developed a brief, informant-report interview for assessing autism spectrum conditions (ASC) i... more We developed a brief, informant-report interview for assessing autism spectrum conditions (ASC) in adults, called the Developmental, Dimensional and Diagnostic Interview-Adult Version (3Di-Adult); and completed a preliminary evaluation. Informant reports were collected for participants with ASC (n = 39), a non-clinical comparison group (n = 29) and a clinical comparison group (n = 20) who had non-autistic mental health conditions. Mean administration time was 38 min (50 min for ASC). Internal consistency (αs ≥ 0.93) and inter-rater agreement (ICCs ≥ 0.99) were high. When discriminating ASC from non-ASC, the 3Di-Adult showed excellent sensitivity (95%) and specificity (92%). The 3Di-Adult shows promise as a psychometrically sound and time-efficient interview for collecting standardised informant reports for DSM-5 assessments of ASC in adults, in research and clinical practice.
Research on the experience of growing older with autism is very limited. In this study, 13 people... more Research on the experience of growing older with autism is very limited. In this study, 13 people with autism aged over 50 years participated in semi-structured interviews about their experiences of diagnosis, social support and getting older. Interviews were analysed using thematic analysis. Three overarching themes were generated: difference, life review and longing for connection. Prior to diagnosis, individuals had awareness of their difficulties, attributed these to intrinsic difference and engaged in a deliberate process of reducing the visibility of this difference. Diagnosis prompted a process of life review and externalisation, whereby past negative experiences were reattributed to autism as opposed to the self. Loneliness, isolation and yearning for interpersonal connection were ubiquitous and longstanding. Autism support and social groups were highly valued, offering opportunities for belonging, acceptance and social comparison. Results highlight the similarity to younger...
Background: Many people with intellectual disability present with challenging behaviour which oft... more Background: Many people with intellectual disability present with challenging behaviour which often has serious consequences such as the prescription of long term medication, in-patient admissions and disruption of normal daily activities. Small scale studies of Positive Behaviour Support (PBS) delivered by paid carers suggest that it reduces challenging behaviour and costs of care and improves quality of life. This study aims to investigate whether professionals training in the delivery of PBS as part of routine practice is clinically and cost effective compared to treatment as usual in community intellectual disability services. Method: The study is a multi-centre cluster randomised controlled trial involving community intellectual disability services in England and service users with mild to severe intellectual disability and challenging behaviour. The teams will be randomly allocated into one of two conditions, either training and support to deliver PBS or treatment as usual. We will carry out assessments of challenging behaviour, use of services, quality of life, mental health, and family and paid carer burden at six and 12 months. We will monitor treatment fidelity and we will interview a sample of paid and family carers, service users, staff and managers about what they think of the treatment and how best we can deliver it in routine care. The main outcome is reduction in challenging behaviour at one year after randomisation. We will also carry out a health economic evaluation to examine the costs and consequences of staff training in PBS. Discussion: The study findings will have significant implications for the delivery of PBS in community based services with the potential for reducing inpatient admissions and out-of-area placements for adults with intellectual disability and challenging behaviour. Trial registration: This trial is registered with Clinical Trials.gov (Ref NCT01680276).
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